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Tuesday, 17 February 2015

Gideon

I knew I was pregnant before I even took the test.I felt sick.My appetite was down. Overall my body just felt off - If I wasn’t
pregnant than I definitely had to see a doctor.Right from the get go, this pregnancy felt
different.It didn’t take long before
the ultrasounds would confirm that something strange was going on.The second ultrasound we had showed ChoroidPlexus Cysts in the brain, a thickened focal nuchal fold and what they thought
was hydronephrosis on the right kidney. If it was just one of these markers it wouldn't have been so bad but because there were multiple markers, these signs pointed to the possibility of some kind of genetic condition. I
was scared.Did my child have something
seriously wrong with him?Was he going
to be able to survive the pregnancy?I
stopped sleeping and took up the hobby of internet researching.I think that is one of the ways I deal with
the unknown… by trying to overcome the unknown through wrapping my mind around
things.This habit can be helpful when you
have to talk with health care professionals but it also can add a whole lot
more "What Ifs" into the picture.We had
to go down to London for another ultrasound and a consult with Genetics.In London they found that the nuchal fold was
not thickened and was within normal limits, that the cysts would disappear on their
own and that the kidney was actually a multicystic dysplastic kidney and it
would eventually just up and disapear.At this point we did a blood test to rule out the trisomy syndromes.(Down Syndrome, Trisomy 18 and Trisomy 13).We were overjoyed when the test came back
negative and we thought that any gentic issues were off the table.I told myself that I could deal with a child
that had only one functioning kidney.Lots of people live long happy lives with just one kidney.My next ultrasound showed that Gideon was not
growing symmetrically.He had
intrauterine growth restriction.Then
while away visiting my father-in-law in Toronto after he had surgery on his arm
for bone cancer, I woke up, went to the washroom and found myself bleeding. I was sent to London and Hospitalized for
48hours.I took 2 weeks off from
work.On the first day back to work I
had another ultrasound. I work at a hospital so all I had to do was pop down to
Ultrasound, have them wave their wand and then pop back into work.Unfortunately, the ultrasound showed that
there was a lot of restriction in my umbilical cord.This means that there was not a lot of blood
getting to the baby.Again I was sent
down to London and hospitalized for a couple of weeks under observation until
they induced me at 37 weeks.Labour and delivery
were a breeze and Gideon was born a beautiful baby boy at 5 pounds and 2
ounces.That’s when the surprises
started to greet us.

Not only did Gideon have one bum kidney but there was a plethora
of other things going on.Gideon was
born with what they thought was a hypospadias.This is when the hole in the penis is in the wrong place.(After a urology consult months down the
road, it ends up just being a natural circumcision and nothing needs to be done
at this point.)He had a variety of
dysmorphic features that made genetics interested: Low set ears, a high pallet,
an ear pit, and a small jaw. After being discharged, Gideon was found to
have cataracts in both his eyes and microphthalmia.Cataracts are when there is a clouding over
the eyes and his were so bad that they had to be removed.With adults they will put in permanent lenses
to replace the ones that were taken out but with infants they have to wear
contact lenses that need to be taken out and put back in every day.Mircophthalmia is when the whole eye system
is smaller than it should be.This means
that less information can get from the eye to the brain and his eye sight can
be greatly affected.Gideon also failed
his infant hearing screening test.We
are still undergoing investigations as to what is going on with his ears.Right now we know that he has a moderate to severe
hearing loss in his left ear and a moderate loss in his right.More updates on this are sure to come.

Gideon has been slowly making progress.There are multiple workers that come to the
house regularly and he has about six different doctors he sees
periodically.Tomorrow Gideon will be
having surgery on his eyes again.Bizarrely,
his cataracts have come back.The eye
surgeon says she has not seen a case like this in over 10 years.Please wish us luck as we continue on our complicated
journey.